Welcome!

I'll give you a brief history of Lilly and how we have come to this place. Lilly was born with a rare chromosome abnormality. It doesn't have a name like downs syndrome or fragile x. She has a duplication on her 2nd chromosome. We didn't know this when she was born. Around 4 mths we noticed she was just "floppy" and would not hold her head up. At 6mths we started physical and occupational therapy. Around 10 mths she was diagnosed. We saw geneticists and were told she was very rare and we didn't have a lot to go on. She would make her own story. And she has!